stage 4 mestatic renal cell cancer

Texas_wedge

Donb323 said:

Thanks T_W,for the kind
Thanks T_W,for the kind words.
It has been a long uphill road.If it were not for my wife,family and Oncology team at UCD(University of California Davis) I believe I would have been lost along time ago.
One can only hope for the best.When I first found out I had cancer. My Granddaughter was only three months old.I promised her that I would be around for as long as I could.Since then my daughter,has given me two gandsons and another granddaughter. This has probably given me the most strength,for this fight.
The first three years was more or less nromal.I did not have any indications of having cancer. Just every 12 weeks I would have to go in for chest x-rays.Then I had a change in insurance,that led me to another medical facility.(From Kiaser to UCD).That's when I found out I was stage four.
The past six years have had its ups and downs.It hasn't been easy,but atleast I'm still here.I have had enough C-T scans that I should probably be glowing.The medications I have been on have not been fun!I started with 50mg. of Sutent for over 16 months. Then on to Infinitor.This only lasted two months,the side effects were too much for me.(Bood sugars went ski high)Then came Nexavar. I thought this one was going to work for me,but the side effects did not agree with me.(Zapped my strength ).Took a break for a couple of months .Then after this break found out my cancer was starting to run amuck again.So back on the Sutent.Things are starting to grow again,so we will be trying the next drug avalible Inlyta.I'll keep you posted.

Treatments
Don, you're lucky to have lived through the new era, as I'm certain you appreciate, to see all the new therapies that have come on board since your dx. I'm very struck by the way it seems to be proving the case that, with all the new agents, it's possible to keep going by ringing the changes and wrong-footing the disease, not simply by moving on to the latest thing, but also by going back to earlier drugs and getting further benefit from them. I wish you all the best in continuing to keep it at bay and enjoying your great family life.

cbwolters

stage 4 mestatic renal cell cancer
I was diagnosed w/rcc in June 2008, had the left kidney removed. The follow up 6 month later CT scan showed that the cancer had mestasized on the spine (T7 vertebrae) and little tumors in both lungs. I was and still am being treated through North Shore Oncology and Hematology in Libertyville, IL. I was put on a clinical trial in February 2009 and was taken off in November 2011 (I was using Nexavar 5 days on -2 pills a day and two days off and Avastin iv'ed every other week). Towards the end of being on the clinical my creatine levels were off due to the Avastin. In November 2011 my T7 vertebrae disintegrated and the tumor was pressing against my spinal cord leading to incontinence and loss of feeling in my legs. They removed the tumor and put in alot of pins and rods to shore up my spine. In December 2011 I stayed on Nexavar until I was approved for Afinitor (insurance and having the drug company pick up what insurance didn't - the drug costs about $7,000 for a month's dosage). Right now I have a low red blood count and will have to see if I will be needing a transfusion etc. I am fatigued and not feeling great at the moment. Have had oral issues w/the Nexavar and Afinitor (loss of teeth and mouth sores). My best year was between 2010 and 2011. I have a husband that has a necrotic right hip and cannot have surgery until his systemic gout is under control and we can medicaid for him (he also has a colostomy bag due to a perforated bowel while in the hospital) so alot of my fatigue is his at home care, only have a nurse in once a week, physical therapy has been stopped until after the operation and I also have a 90 yr old mom who still lives w/us. So the stress level is quite high and am trying to cope as best I can so the disease does not progress any farther. I have found you can live w/the cancer, just have a positive attitude, try to eat right and get enough rest. Good luck to you

cbwolters

Donb323 said:

Thanks T_W,for the kind
Thanks T_W,for the kind words.
It has been a long uphill road.If it were not for my wife,family and Oncology team at UCD(University of California Davis) I believe I would have been lost along time ago.
One can only hope for the best.When I first found out I had cancer. My Granddaughter was only three months old.I promised her that I would be around for as long as I could.Since then my daughter,has given me two gandsons and another granddaughter. This has probably given me the most strength,for this fight.
The first three years was more or less nromal.I did not have any indications of having cancer. Just every 12 weeks I would have to go in for chest x-rays.Then I had a change in insurance,that led me to another medical facility.(From Kiaser to UCD).That's when I found out I was stage four.
The past six years have had its ups and downs.It hasn't been easy,but atleast I'm still here.I have had enough C-T scans that I should probably be glowing.The medications I have been on have not been fun!I started with 50mg. of Sutent for over 16 months. Then on to Infinitor.This only lasted two months,the side effects were too much for me.(Bood sugars went ski high)Then came Nexavar. I thought this one was going to work for me,but the side effects did not agree with me.(Zapped my strength ).Took a break for a couple of months .Then after this break found out my cancer was starting to run amuck again.So back on the Sutent.Things are starting to grow again,so we will be trying the next drug avalible Inlyta.I'll keep you posted.

Donb323 hey you passed the 5
Donb323 hey you passed the 5 year mark that I was given in 2009 for living w/rcc. Good for you, I am in year 3 and hope to make 2 more and then if I am lucky more.

garym

cbwolters said:

stage 4 mestatic renal cell cancer
I was diagnosed w/rcc in June 2008, had the left kidney removed. The follow up 6 month later CT scan showed that the cancer had mestasized on the spine (T7 vertebrae) and little tumors in both lungs. I was and still am being treated through North Shore Oncology and Hematology in Libertyville, IL. I was put on a clinical trial in February 2009 and was taken off in November 2011 (I was using Nexavar 5 days on -2 pills a day and two days off and Avastin iv'ed every other week). Towards the end of being on the clinical my creatine levels were off due to the Avastin. In November 2011 my T7 vertebrae disintegrated and the tumor was pressing against my spinal cord leading to incontinence and loss of feeling in my legs. They removed the tumor and put in alot of pins and rods to shore up my spine. In December 2011 I stayed on Nexavar until I was approved for Afinitor (insurance and having the drug company pick up what insurance didn't - the drug costs about $7,000 for a month's dosage). Right now I have a low red blood count and will have to see if I will be needing a transfusion etc. I am fatigued and not feeling great at the moment. Have had oral issues w/the Nexavar and Afinitor (loss of teeth and mouth sores). My best year was between 2010 and 2011. I have a husband that has a necrotic right hip and cannot have surgery until his systemic gout is under control and we can medicaid for him (he also has a colostomy bag due to a perforated bowel while in the hospital) so alot of my fatigue is his at home care, only have a nurse in once a week, physical therapy has been stopped until after the operation and I also have a 90 yr old mom who still lives w/us. So the stress level is quite high and am trying to cope as best I can so the disease does not progress any farther. I have found you can live w/the cancer, just have a positive attitude, try to eat right and get enough rest. Good luck to you

Welcome to the club...
cb,

This is a club that all hope will no longer be needed some day, initiation as you well know is not an enjoyable experience. Your story moves me, to be able to maintain a positive attitude and persevere when it seems everything is stacking up against you and trying to beat you down is an inspiration to those of us whose fight has been much easier. You are a true warrior, please stick around and continue to share your story, we will support you even as you support us, that's how it works here.

A fellow survivor,

Gary

nbk9685

renal scare 57 said:

im sorry my comment after rereading didnt make a lot of sense even to me lol i have stage 4 it is in liver, right lung totally filled with it, left lung partically filled and in lymp nodes and in soft tissue cell they told me i had less than 1 year. i had to come off sutent after 19 days tooo many side effects the doctor said we might try it again the 27 of march 2012 i already had the kidney removed i was just curious if anyone has this as bad as this and have they beat it


thanks to all who has responded to my statement before

Long Time Renal Cell Patient
My husband was diagnosed in May of 1999 with a grapefruit sized Renal Cell tumor housed in his left kidney. We elected to have his left kidney removed. He was given a clean bill of health at that time. Fast forward September 2011 a golf ball sized lump was discovered in his thyroid which tested as negative for Cancer 3 times via needle biopsy. We decided to have the lump removed and analized at that time. No surprise, it was Renal Cell Cancer (now stage IV Metestatic). Most recently in late February of 2012 they found a 6CM Renal Cell tumor in his only remaining right kidney. Since my husband has a thriving career, plays golf, bowls, and works out 4-5 times a week we decided against the removal of his only kidney. We went to various Oncologists who advertise the newer treatments only to find out his tumor is too large to consider for the kidney sparing procedures. Long story short my husband went on Sutent in April 2012. He had a few issues with the negative side effects, but from what we understand each month that you are on Sutant the side effects lesson. He is still doing well and has a great attitude. My hope is that he will log on to this site to communicate with all of you. This is an awesome way to bond with other folks who are going through this experience. God bless you all!

foxhd

nbk9685 said:

Long Time Renal Cell Patient
My husband was diagnosed in May of 1999 with a grapefruit sized Renal Cell tumor housed in his left kidney. We elected to have his left kidney removed. He was given a clean bill of health at that time. Fast forward September 2011 a golf ball sized lump was discovered in his thyroid which tested as negative for Cancer 3 times via needle biopsy. We decided to have the lump removed and analized at that time. No surprise, it was Renal Cell Cancer (now stage IV Metestatic). Most recently in late February of 2012 they found a 6CM Renal Cell tumor in his only remaining right kidney. Since my husband has a thriving career, plays golf, bowls, and works out 4-5 times a week we decided against the removal of his only kidney. We went to various Oncologists who advertise the newer treatments only to find out his tumor is too large to consider for the kidney sparing procedures. Long story short my husband went on Sutent in April 2012. He had a few issues with the negative side effects, but from what we understand each month that you are on Sutant the side effects lesson. He is still doing well and has a great attitude. My hope is that he will log on to this site to communicate with all of you. This is an awesome way to bond with other folks who are going through this experience. God bless you all!

Welcome
Welcome. tough choices. Have your husband join in if he can.

alice124

nbk9685 said:

Long Time Renal Cell Patient
My husband was diagnosed in May of 1999 with a grapefruit sized Renal Cell tumor housed in his left kidney. We elected to have his left kidney removed. He was given a clean bill of health at that time. Fast forward September 2011 a golf ball sized lump was discovered in his thyroid which tested as negative for Cancer 3 times via needle biopsy. We decided to have the lump removed and analized at that time. No surprise, it was Renal Cell Cancer (now stage IV Metestatic). Most recently in late February of 2012 they found a 6CM Renal Cell tumor in his only remaining right kidney. Since my husband has a thriving career, plays golf, bowls, and works out 4-5 times a week we decided against the removal of his only kidney. We went to various Oncologists who advertise the newer treatments only to find out his tumor is too large to consider for the kidney sparing procedures. Long story short my husband went on Sutent in April 2012. He had a few issues with the negative side effects, but from what we understand each month that you are on Sutant the side effects lesson. He is still doing well and has a great attitude. My hope is that he will log on to this site to communicate with all of you. This is an awesome way to bond with other folks who are going through this experience. God bless you all!

Long time renal cell patient
We have more jocks on this site than Sports Illustrated has on its covers. Your husband sounds like he'll fit right in. Good luck to you both.

Priyanka Rai

Hi, 
This blog is really

Hi, 

This blog is really encouraging 

 

http://cancerguide.org/kmcghee_story.html

 

All the best and be positive !!!